Harry's rhabdomyosarcoma story

Your child has cancer

Four words NO parent ever wants to hear.

But this month alone, 375 families will have those words said to them. 12 families a day, of children aged 0-24, will be diagnosed with cancer. We all know what the pink ribbon stands for and we are now talking about testicular and prostate cancer far more freely than we once did. But do we hear anything about childhood cancer? Well, that would be a ‘no.’

No one wants to hear that little children, babies and teenagers are dying each day of this terrible disease. But for the oncology parents in this world, this is a daily reality.

Before it all started

Harry is my only child, born in New Zealand in 2006. I thought I’d left it too late to have children and he is indeed, my miracle child. Some may say I was an anxious parent, always wanting to be sure that everything was progressing as it should. I felt Harry was delayed in his fine and gross motor skills, as well as his speech and he was under the Child Development Centre in New Zealand for this. Healthcare in New Zealand is very different to the UK, another reason to be rightly proud of our NHS. Being half way round the world, visits from family were rare but my dad and step mum were able to visit when Harry was nine months old and again when he was three years old. Keep an eye on Teddy as he features very heavily in Harry’s journey.

Their last visit proved very significant as it made me realise that I needed to return to the UK. Harry was dual nationality, we were both British citizens, so no problem, surely. We planned to return by December 2010 but were able to secure our move for August 2010 instead. And this proved to be a complete lifesaver.

Our return to the UK and diagnosis

In the winter of 2011, Harry continued to have the usual cough and cold issues and had what appeared to be conjunctivitis. We went to the GP but things didn’t improve with antibiotics. This went on for a few weeks and then Harry had an offensive smelling nasal discharge, as well as the sticky eyes. He was referred same day to our local Ear, Nose and Throat Service as they thought he had been a typical four year old and shoved something up his nose. However, Harry would not comply to having a scope up his nose and they said to come back in a couple of days ‘for a small operation, shouldn’t take more than 10 minutes or so.’ My husband was still in New Zealand, closing up our affairs and I contacted him to tell him of the operation.

My dad and I took Harry and Teddy to our local for the ‘wee operation.’ Despite the time difference, my husband was in constant contact as the 10 minutes became half an hour, half an hour became an hour and an hour became two. Dad and I were eventually called through and I just knew something was wrong, he either didn’t come through the anaesthetic, or, they’d found something. The doctor said; “We think Harry has something called embryonal rhabdomyosarcoma. He will need to be referred to St George’s Hospital for a central line and more diagnostic testing but you’ll go to Royal Marsden in Sutton first, in a few days’ time.” I’d never heard of this cancer before, I had heard of leukaemia in children before but never any other forms of cancer.

And so our journey began

We attended The Royal Marsden and the first thing I needed to prove, was Harry’s residency as he had been born outside of the UK. The fact he was a British citizen with a UK passport meant nothing, we had to prove residency. We had to have been in the UK for more than 6 months to qualify for NHS treatment. Had we returned as planned in December 2010, this would have meant we had only been in the UK for three months. By returning in August 2010, we qualified for NHS treatment.

We had been told that once the investigations and testing’s had been done, chemotherapy would start ‘in a few weeks’ time,’ three different drugs every three weeks for nine cycles and between cycles three and four, radiotherapy would commence. However, after an MRI at St Georges, we were informed due to the size and position of the tumour (6cm by 5cm by 4cm, under his eye, behind his nose and obstructing his breathing) chemotherapy would start now, here at St Georges, where there was a paediatric intensive care unit.

Harry qualifies for Proton Beam

One of the most useful pieces of information I was given whilst at St Georges, being thrown full pelt into the world of oncology, was something that Young Lives Vs Cancer provided for me. They gave me a ‘File of Facts,’ a play on words of the Filofax. It was a compendium containing a diary, sheets to note all blood results, information on benefits and charities to support cancer patients and a list of all the Primary Treating Centres and contact details. To have all of this in a compact, portable format was a totally brilliant idea and became my bible throughout his treatment.

After our second bout of chemotherapy, on 27 April 2011, we were told that Harry should qualify for Proton Beam radiation, based on his age, his diagnosis and the location of his tumour. This is more of a three dimensional treatment, going the length, breadth and depth of the tumour and preserving everything else around it. The only issue was, it wasn’t available in the UK but in America, and we would need to be there for a total of three months. At the time of this discussion, we were only the second family who had been recommended this treatment. We found out we had been accepted for funding on 15 June 2011 and on 30 June were told we were flying out 48 hours later.

Harry continues with chemotherapy

My husband came over from New Zealand to be with Harry for the duration of his treatment as I wasn’t able to get the full amount of time off from work but I was able to be there at the beginning and at the end. Harry was due 28 doses of proton under daily anaesthetic, followed by five days of intensive proton at the end. He also continued his chemotherapy in the children’s hospital throughout treatment.

Overall, Harry coped really well. He used to take a very long time to come round from the anaesthetics and we didn’t have time during the day to partake of the many activities which were on offer to us. He was often the first to go down soon after 7am and often wouldn’t get back home to the Ronald McDonald House until 7pm. By the end of his treatments, he had significant radiation burns, mucositis and had an NG feeding tube. On his good days, he would be out and about and happy to smile for all.

10 year review schedule

We were given a 10 year review schedule for Harry, with a list of all the investigations to take place once back in the UK. Proton was still a very new treatment, only a two year history in America, so long term side effects were not necessarily known, apart from the fact that residual areas are better protected in the brain. The plan was for Harry to have an end of treatment MRI to coincide with the end of his chemotherapy in mid-October 2011. After each of Harry’s MRI’s, I would ask for ‘his numbers,’ the size that the tumour now was, and each time, even with chemotherapy alone, the tumour was decreasing in size. Harry was really poorly on his flight back from America and we transferred directly from the airport to our local hospital. His final chemotherapy was delayed due to poor blood counts and multiple infections and we finally had his end of treatment scan on 24 October 2011.

Four days later, we returned for the results. I asked for his numbers, to be told, ‘what numbers? There are no numbers. There’s no evidence of disease (NED) remaining.’ After being told by the proton team that it may be difficult to ascertain an NED due to the amount of residual scarring, this was absolutely massive. After six months of gruelling treatment, my beautiful brave son had smashed it.

Back to normal now, then? All done. Move on. That’ll be a no. We have an entirely ‘new’ normal now. Yes, there is no more invasive treatment but follow up appointments remain and as the years progress and side effects become more apparent, then new services become involved. At about six years post treatment, we still had over 70 hospital appointments in the year.

Teddy runs the London Marathon

During our time, we have done some Childhood Cancer Awareness and the Facebook group for parents which I am part of, were central in instigating with another charity to ensure that Childhood Cancer Awareness Month occurred in September, in line with the rest of the world, as opposed to December, which prior to that, was the month the UK publicised it.

A key part of awareness was when my step sister ran her first London Marathon for Children with Cancer UK with Teddy. Teddy had been to every single hospital appointment with Harry and was strapped to her back throughout the Marathon. He got her across the line and got his own medal for his troubles.

The side effects and raising awareness of childhood cancer

Over the years, Harry has had problems with his sight and had cataracts removed; problems with his mobility and has been under physiotherapy and occupational therapy; problems with his hearing and has been under audiology; problems with his speech and has been under speech and language; problems with his hormones and under endocrinology, where he takes a growth hormone injection and is on artificial testosterone, among other things. When he was eight years old, he had an episode of severe abnormal body movements that led to a discovery of a compression in one of the blood vessels in his brain and he remains under neurological review for this. He has been diagnosed with an autism spectrum condition but this did not stop him gaining top marks for entrance into grammar school when he was 11 years old.

Harry and I are fully involved with Childhood Cancer Awareness Month each year and would often do a number of awareness articles each year. We both continue to raise awareness about childhood cancer and the impact it has on the young person and their families. We raise money with The Gold Ribbon, do cake sales, have done talks and presentations in school and to health professionals. I am still active in the Connecting Parents Facebook Group as well as the RMH FB Group, to support parents through their journey. These groups weren’t around when we started our journey and to be able to reach out in times of need is so helpful and supportive. We try and meet up a couple of times a year too, to kick back and connect with people who know and understand, because they too, have walked this path, they have worn the shoes that we also wear.

The sailing trip

Harry was very lucky to be selected by the Ellen MacArthur Cancer Sailing Trip in 2019 and this was the first time he had been around a group of young people who had experienced cancer whilst they were young. It was his first time away from home, without school teachers or his family. He had an absolute ball.

The worry about the cancer returning never disappears for us as parents. However much you try and push it aside, move on, that niggle remains at the back of your mind. Every muscle ache, every temperature, every change in normal routine, makes you think and question. Every success is celebrated, every birthday an occasion, every Christmas embraced.

My son is my hero

Our team in Florida put us forward in 2019 for some long term research into potential side effects from proton for head and neck rhabdomyosarcomas. Remember I said at the time that treatment had only been in place for about two years when we started. It is so important that long term research continues, that we are able to build a picture of what potential effects this life-saving treatment may have in the future. Harry attended Great Ormond Street in September 2019 for a day of interviews and investigations, one of which discovered he has had no roots at all in his top jaw to anchor his adult teeth. You can see the teeth embedded but there are no roots behind them, to push them through and the baby teeth out. This has led us to be referred to our local MaxFax service, for possible jaw reconstruction in the future.

On 28 October 2021, we will reach our 10 year anniversary of No Evidence of Disease remaining. The spreadsheet provided by the team in Florida will come to an end. But reviews will still continue, albeit on a routine basis. Will I stop being the hypervigilant parent? Probably not.

Research MUST continue. We MUST keep talking about the over 200 different forms of cancer that children can get. We MUST research kinder treatments for children and we MUST make health professionals aware of the concerns we have about our children.
January 2020

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